@brianna-albers
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Kevin Schaefer started the topic The SMA News Today Podcast 47: James Ian in the forum Adults With SMA 2 days, 4 hours ago
Hey everyone! Hope you’re all having a great week so far.
Check out the latest episode of the SMA News Today podcast here. I interviewed James Ian, a musician and actor who has SMA Type 3. He currently lives and works in Los Angeles, California.
We met at this year’s Cure SM…[Read more]
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Kevin Schaefer started the topic Motivation Monday: Social Media in the forum Disability in Media 3 days, 1 hour ago
Hey everyone! Hope you all had a great weekend. For those in the U.S., hope you all enjoyed the Thanksgiving holiday.
For today’s Motivation Monday topic, I wanted to talk about how we might use social media as a source of inspiration. While there is plenty of negativity on various social media platforms, there are positive things as well. I…[Read more]
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Kevin Schaefer replied to the topic Using the JACO Robotic Arm to Make Coffee in the forum The SMA News Today YouTube Channel 1 week ago
DeAnn, Alyssa, join the SMA cyborg army!
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Kevin Schaefer started the topic Using the JACO Robotic Arm to Make Coffee in the forum The SMA News Today YouTube Channel 1 week, 1 day ago
Hey everyone! Hope you’re all having a great week so far.
Check out the latest episode of “Ryan’s Robotics” here. In this video, Ryan demonstrates how he uses his JACO Robotic Arm to make coffee. It’s a simple, yet powerful, example of how this device makes Ryan more independent e…[Read more]
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Kelly Miller replied to the topic Crockpot Cooking and SMA in the forum The SMA News Today YouTube Channel 1 week, 1 day ago
We like to make all kinds of peas & beans in the crock pot. Our most recent was black beans with onions & green bell peppers & spices. We then serve it over rice. I can’t chew the meat very well, but Jack likes andouille sausage in it also. It gives the beans a good flavor. A few weeks before that we made lentil stew. It’s pretty much lentil soup…[Read more]
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Kelly Miller replied to the topic Risdiplam Questions in the forum Adults With SMA 1 week, 1 day ago
Thanks for bringing this up Lupa! I had gotten it confused with Zolgensma, so I was thinking it would be a one time deal. Hope I didn’t confuse anyone – except myself, lol.
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Kelly Miller replied to the topic Risdiplam Questions in the forum Adults With SMA 1 week, 2 days ago
I’m so glad you brought this up DeAnn because I have an appt also with my new neurologist here in Florida on Dec. 10. Like you, I have Medicare as my primary insurance, but mine is straight Medicare, no advantage plan. I also have Blue Cross Blue Shield from my former job as a Fed employee which covers what Medicare doesn’t pay & it covers all my…[Read more]
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Kevin Schaefer replied to the topic Risdiplam in the forum Diagnosis Information and General Questions 1 week, 2 days ago
Hey Lupa, thanks for the heads up. Our news team is fixing this.
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Kelly Miller replied to the topic Sad News in the forum Adults With SMA 1 week, 2 days ago
I was so very sorry to read your post tonight, DeAnn. I’ve had pets for as much of my life as I can remember, and they have always been a very special part of our family..My husband & I have been thru a couple of dogs in our 22 year marriage, and each death has been just as heart-wrenching as the others. I’ve never had a service dog, but I can…[Read more]
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Kelly Miller replied to the topic Risdiplam in the forum Diagnosis Information and General Questions 1 week, 2 days ago
Olga,
I’m sorry to hear your brother can’t have the Spinraza injections as he would like. I’ve also had a spinal fusion that put lots of pieces of bone in my back, along my spine to make it grow straighter. Because of this, any kind of injection in my back is next to impossible. Drs. have tried before to do epidurals and cortisone injections with…[Read more]
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Kevin Schaefer replied to the topic Sad News in the forum Adults With SMA 1 week, 2 days ago
So sorry for your loss DeAnn. I always enjoyed Roy’s appearances in your videos, and my heart goes out to you.
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Kevin Schaefer started the topic Motivation Monday: Gratitude in the forum Raising Awareness of SMA 1 week, 2 days ago
Hey everyone!
Since we celebrate Thanksgiving this week in the United States, I wanted to talk about gratitude for today’s Motivation Monday topic. I know those “five things I’m grateful for” lists are super cheesy, but nonetheless I think it’s important to recognize the things in our lives that bring us joy. As this article in Psyc…[Read more]
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Kevin Schaefer started the topic Columnist Writes About The Art of Rejuvenation in the forum Adults With SMA 2 weeks ago
Hey everyone! Hope you’re all having a great week.
Check out my latest column here. I know I’ve written about this before, but sometimes I struggle to find a good work/life balance. Rest and rejuvenation are crucial for anyone, but especially for those of us with SMA. It’s a lesson I often need to remind myself of.
Fortunately, the North…[Read more]
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Kevin Schaefer started the topic The SMA News Today Podcast 46: Roundtable Discussion November 2019 in the forum Raising Awareness of SMA 2 weeks, 2 days ago
Hey everyone! Hope you’re all having a great week so far.
Check out the latest episode of the SMA News Today Podcast here. In this roundtable discussion, Michael and I talk about several recent news stories and columns. The first story we look at is a…[Read more]
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Kevin Schaefer started the topic Motivation Monday: Reading in the forum Adults With SMA 2 weeks, 3 days ago
Hey everyone! Hope you all had a great weekend.
For this week’s Motivation Monday post, I have a simple, but important topic. Anyone who’s seen my posts here or read my columns knows that I’m a bookworm. I’ve made it through some of the hardest times in my life by reading. Books and stories have the power to inspire, teach, entertain, m…[Read more]
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Kevin Schaefer started the topic Having a High Quality of Life While Living With SMA in the forum Adults With SMA 3 weeks, 1 day ago
Hey everyone! Hope you’re all having a great week so far.
Check out my latest column here. I recently had a couple friends on the SMA News Today Podcast, and we spent a lot of time talking about their late son Carson. Carson was a friend of mine, and it was cathartic for me to talk with his parents about his life.
Among other things, w…[Read more]
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Kelly Miller replied to the topic Interview With Andrea Klein, Founder of Breathe With MD in the forum The SMA News Today YouTube Channel 3 weeks, 1 day ago
Thanks DeAnn for putting this video on here. BreathewithMD.org is a fantastic reference for materials that help with doctors & hospitals when it comes to the respiratory issues we all have at one time or another. I had been dealing with pneumonias & many bouts of bronchitis throughout the yrs. without even knowing about the supplemental oxygen…[Read more]
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Kevin Schaefer started the topic Motivation Monday: Parenting With a Disability in the forum SMA Parents and Caregivers 3 weeks, 3 days ago
Hey everyone! Hope you all had a great weekend.
For today’s Motivation Monday topic, check out this article from the MDA Quest magazine. The author is a woman with SMA, and a few years ago she and her husband adopted a child who also has SMA. She writes about the unique relationship she and her son have, and how others perceive i…[Read more]
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Kevin Schaefer replied to the topic I'm Kinda Scared in the forum Adults With SMA 3 weeks, 3 days ago
Thanks for keeping us updated Crystal! Let us know if there’s any other way we can help.
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Kevin Schaefer replied to the topic Columnist Writes About Existing and Emerging Treatments in the forum Raising Awareness of SMA 3 weeks, 3 days ago
It really is surreal. I’m curious too, since you started Spinraza before any of us, have you noticed any effects lately? What have your energy levels been like?
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